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It feels heavy, persistent and I hear it rumbling deep
inside. Like a hunger that I don’t have the time to feed. The rumbling which
started softly, rises in volume until it is all I can hear. I want to be too
busy with life that I can ignore it, but finally I have to acknowledge it, that
I feel upset. My body makes me listen. I can’t focus or be present with other people
until I figure out what exactly I’m feeling.

A few weeks ago, I hit that point. It was totally inconvenient
and I avoided it as long as I could. Sometimes when I wait this long I lose
words altogether and the only way I can access myself is through drawing. I was
doodling in my journal, finally conceding to attend to this seething, multi-layered
mess, and I drew this sign from Math, a “greater than > less than sign”. A
sideways letter “V”, with the open side facing the amount which is worth more
in the equation. Never one for math, I always imagined it like Pac Man gorging
himself on coins, his mouth always facing the side with more. This “greater
than > less than sign” was drawn with a line of chains links. Like if you
laid out a chain in a sideways “V,” except I drew in every other link darker,
so it looks like a chain at first; but if you looked harder you saw each link
was on its own, like individual circles making a “V”. I paused and looked at
what I had drawn and felt the lid lift on all of my emotion.

I deeply desire community. As a Mestiza raised in Latin@
culture, as a Disabled woman who grew up poor, and as someone who is passionate about
self-care and traditional shamanistic practices, most of my community
interactions require accountability. To participate at all, I am required to
hold people accountable. It requires so much energy for me, offerings of energy
and effort.

There’s a built up expectation of who belongs in a
community. Exclusion affects people on both sides of the “greater than >
less than” equation. On one side of the equation, it leaves a person out and
alone. On the other the side, it requires someone or a group of people to
participate in hurting a person. This is especially true when the excluded
person has directly asked to participate or for access, and the person they
asked this from refuses to be accountable. It disempowers both people and both
people often blame each other for that feeling of disempowerment.

Twitter conversation: #disabilitysolidarity

I decided to join a Twitter conversation discussing the
reaction to a solidarity letter that a Disability organization put out for
people to sign onto concerning the murder of Michael Brown and the activist
response in Ferguson. Unfortunately, this letter centered disability
experiences with police brutality versus acknowledging and condemning racism
and the devaluing of men of color. In the comments on the Twitter conversation
announcement page, it seemed like people seemed to want to discuss how the
Disability community could show up in solidarity with activists in Ferguson.

Instead, when the #disabilitysolidarity conversation started
most people began discussing police brutality and the many murders of Disabled
people by police officers. People discussed how people of color weren’t
included in Disability community. And people wrote about disability access issues,
for example, the lack of interpreters at events and the requirement that
protesters in Ferguson keep moving at marches. A few people tweeted that these
were all valid issues that needed their own space and discussion, but
solidarity was more than disability (individual and community) issues.

I asked, “As people of color what can WE do to be in
solidarity within disability community and in solidarity with Ferguson?” People
responded to my tweet asking me to be mindful of access, providing access, and
not dismissing what people asked for in terms of access accommodations. These
tweet responses were some of the most retweeted comments from the whole
conversation.

At first, I was confused. Then I realized that they were
assuming that I wasn’t disabled, and I felt embarrassed.

In my head, I keep thinking that it’s just a Twitter
conversation. People only have 140 characters, and those 140 characters were
flying across the screen, mostly people just stating things and hitting “return.”
It wasn’t a “real” conversation. Yet, the problem is that even in
conversations, this mistake still happens – people assume that if I speak from
one community that I must also not be part of their community.

Women of color writing group

I was so excited earlier this summer when an acquaintance
invited me to a gathering of women of color to share writing. I met another
disability activist at the first meeting who seemed excited to connect with me.
I talked about self-care and people seemed interested in that. However, the
meeting space was at a woman’s apartment. Because it was a person’s house, I
had assumed it wasn’t wheelchair accessible. I used my energy to walk in and
then realized upon walking in that there weren’t any chairs. I also discovered
I couldn’t use the bathroom. I used more energy to sit on the lone bench that
didn’t give me the support I needed to sit comfortably. All of which I did in
silence without anyone acknowledging the issue. The next time I went, I brought
chairs and I left when I needed to use the restroom. The women were thankful for
the chairs and my navigation of the inaccessible space continued unacknowledged
by the group.

Most of the people attending this writing group volunteered
at a local community garden. They talked about this garden as a safe space. It
was located in a diverse neighborhood and they described this safe space as a
space where they didn’t have to conform to dominant culture norms. They were
discussing community events that were to be located there and so I asked if it
was accessible. They didn’t think it was. I offered to help give tips on
accessibility, to even go and check it out to help make a plan for access.I got a smile and the agreeable sounding,
“yeah...” response. I know that response. It’s the nice dismissal. I dropped
it.

A free poetry festival was happening in the town I lived in
and a woman of color poet I really wanted to see was reading. It turned out one
of the people attending the writing group was on the organizing board for the
poetry festival. I talked to them about the location of the event, a hotel/bar
downtown. It was historic had made minimal ADA upgrades. There were stairs in
the middle of the performance space and only one ADA compliant bathroom, which
could only be accessed from one specific entrance. I suggested options for
making the space more accessible, hoping that this person could act as an ally
to create a disability access change at the venue. I gave them my email and
offered to help in whatever way they needed. I didn’t hear from them and when I
arrived at the event, there didn’t appear to be any access changes. One of the
workers, noting that I, a wheelchair user, was there put down a noncompliant
ramp over the stairs. I tried to push up frontwards, and nearly tipped over
backwards. Then I turned around to try and go up backwards, and nearly slid
forward out of my wheelchair. While I was making my effort to get up the ramp,
my partner blocked strangers from grabbing my chair to force me up the ramp.
(I’m always amazed that someone grabbing a wheelchair, taking control of a
disabled person’s body is still socially acceptable and not viewed as assault.)
I couldn’t get up the ramp. By now, I was frustrated and told the person from
the writing group that I was leaving. They then advocated and got the venue to
open up an emergency exit for me to get in on the performance floor level. They
gave me a complimentary drink coupon and an apology. However, the drink coupon
remained unused because there was no way I could get back out, to go around the
building to get to the bathroom. After the reading, the person apologized and I
tried to affirm that they did the best they could in the moment. Yet, a poetry
series that this same person from the writing group MC’s monthly at a downtown
coffee shop, which was also inaccessible, continues to be located there.

In addition to the energy and work I expended to make this community event even minimally
accessible, I lost the opportunity to make a friend. It sucks on both sides of
the “greater than > less than” equation. Now, every time they see me, they
look at me defensively, perhaps remembering the advocacy and accountability I
asked for, and not that I’m a fun person who loves poetry. And every time I see
them, I now think about how they never followed up with me and about how I felt
excluded and emotional, despairing of any change. One side has the privilege to
ignore what exclusion means – that for example, disabled people like me are not
treated as human beings with full rights and dignity. On the other side, the
excluded person knows that ultimately they can’t do anything but advocate the
best they can and deal with being excluded.

And even though all of this is true, I’m
still unclear on why I’m so emotional. There is a lack of clarity to the clear
picture and it is fuzzy. There shards of truth – solidarity – accountability –
exclusion – greater than > less than dynamic…

What is?

I desire community. I want to bring all of the worlds I live
in into the worlds I interact with. Yet, “community” that exists is often
singular – Disability community, Mujeres community, shamanistic community. Most
of me is excluded as I attempt to participate in one of these
non-intersectional communities. I try to figure how to leave pieces of myself
behind. Yet, when in one of these communities if I try to squeeze my disabled
self out, then I literally I can’t physically function. If when I interact with
people I try to exclude my Mestiza self then I can’t socially function. In
shamanistic communities, I am often perceived as needing to receive “limpias” (cleansings/balancings)
versus having the capacity to perform them; because “healing justice” means
practitioners are supposed to look like the representative of “health”, agile
and non-disabled.

I am light-skinned, raised on the border immersed in one of
my cultures (Mexican), where the privilege of “passing” also has a backlash of
anger at not matching up with white cultural assumptions that I should
understand and interact within white cultural norms. This is not to say that I
don’t benefit from light-skinned privilege. Every time I pass through border
patrol checkpoints and am just waved through, every time I am invited into an
opportunity where someone is less threatened because I “look like them”, and
every time I look at cop in the face and just see them register boredom, I am
receiving privilege. And I admit I use this privilege. I participate in
disability community, treading on my light skin and try to just not talk. It,
at least, lets me get that far. With people of color and shamanistic
communities, I have less ability to even get in the door because I need disability
access to get in.

In Disability community space, cultural interactions are in
dominant culture format. It reflects who has power in the community (primarily
white, straight men and women with physical disabilities). You are supposed to
talk quietly; use no slang, (which I could agree with if it’s for access reasons);
to disagree is to be impolite; and how to live like a privileged, dominant
culture, nondisabled person is supposed to be centralized in the conversation. This
means discussing things like; working, travel, accessing stuff like the movies,
and living alone in an apartment or house in the city. Sometimes it means also
talking about relationships, yet almost never sex. Mostly, we talk about the
blatant discrimination when it comes to “access” and “choice”. However, we
discuss it with the assumption that you’d choose to live like a privileged,
dominant culture, nondisabled person if given the chance. It is important to
discuss choice, access and disabled people. Yet, Disability organizations and
leadership create an agenda that does not challenge the status quo. We are
always asking how we can fit into the system versus practicing Disability
Justice, re-envisioning what inclusion means, and demanding an expectation of
difference.

When we come together in community, there’s such an intense
desire to have “safe space” in order to discuss our common oppression, safe
space meaning everyone feels comfortable. Yet, in reality, for those of us trying
to bring in our many worlds into the space, comfort isn’t possible. For
example, when I can’t access where the event is (or relieve my bladder), safe
space isn’t happening for me. We can’t pretend that because we share oppression
that we will then be the same culture/identity/class outside of that
experience. We must be aware that if we want the opportunity to connect through
a common culture, then we must also be willing to be uncomfortable. I define
safe space, and feel like I’m in it, when there are ways to deal with being
uncomfortable that everyone has agreed on.

I want to be involved. I’m writing a book for people who
live in multiple worlds and work on social justice. Yet, ironically, I’ve
connected to people like me and am in safe space only through informal
connections. I have a few disabled people of color friends who grew up poor and
identify as female. So rare is it that I get to participate in a community
where I can even get to the point of bringing up identifying as a woman, which
is often part of gender-binary privilege, or where I can bring up being raised
poor, which involves multilayered experiences like going to the poor people
clinic to get disability medical care. Because I can bring in all of these
pieces of my experience, these informal connections are lasting. Even though
the ability to be my full self happens through the development of
relationships, based on what we have in common, the real safety happens in how
we navigate when we make each other uncomfortable, triggered, or angry. When
our differences clash, the cleansing of mutual respect, patience and the risk
of love lets us return to each other again and again.

Self-care in community starts with doing our own work to
make our spaces safer. This work requires us to bring ourselves to the edge of
discomfort and to ask for specific agreed upon ways to handle conflict. Perhaps
the group could agree to let go of controlling the outcome, trusting that
people will return, leaving truth on the table and returning to it, even if
people continue to disagree.

Discomfort is different from emotional pain. The only way we
learn about discomfort is to risk putting aside our defensiveness and trying to
go to our discomfort’s edge.We can go
to that edge and sometimes when we sit there, maybe with no answers at all, we
find we can go further. Being uncomfortable together, not relying on one person
to continually push us there or hold us accountable, is one of the best ways to
demonstrate a commitment to safe space. It is a commitment we can all choose to
make.

About Me

Naomi Ortiz is a writer, poet and visual artist who cracks apart common beliefs and spills out beauty. As a disabled Mestiza living in the U.S./Mexico borderlands, Naomi supports individuals to build bridges through facilitated discussion, art, poetry and reflection, connecting them to their own truths around self-care and living in multiple worlds. Naomi provides individual consultations and is a nationally known speaker and trainer on self-care for activists, disability justice, and intersectionality. Her upcoming book, "Sustaining Spirit: Self Care for Social Justice" invites and supports readers to explore the relationships between mind, body, spirit, heart and place in order to integrate self-care to survive and thrive. "Sustaining Spirit: Self Care for Social Justice" will be released in 2017.